Open the Cage

[Guest guest]

Hi all,

While poking around the internet searching for some new helpful items for the

SPF website, I came across the below article I found at the ALS Survivor

Guide website. It was written by a mental health expert about the adjustments

in

a new identity and that we need to play the hand that was dealt as best we

can.

I thought it worth sharing, so it's below.

best,

Kathi

________________________________________

From a Mental Health Expert - Open the Cage

An old adage goes " It is not the things that happen to us but the meaning we

give those experiences that cause us pain " .

If we consider that idea, then we have a certain choice and power over the

losses brought about by this disease. How we define (or remember) ourselves and

our family relationships before the onset is a key issue and task for our

current mental health. For example, your view can be, " I (Harry or ) have a

great sense of humor, adventure, fairness, a love of conversation and have a

very playful relationship with my partner " , The disease process could have

shifted that view to " ( or Harry) am a victim, can't do anything, can no

longer

talk and am a burden on my family " .

Good mental health has to be based on the core person you each were (as an

individual and family) before the illness, allowing for the limits and losses.

Counseling must help you to re-connect with those characteristics. It must

help you re-envision and rediscover yourself. It also requires you to set up

situations in which those characteristics can be experienced and expressed

again.

Probably every one has read " Tuesdays with Morrie " . Wasn't his unique

essence the ability to be himself and make his natural curiosity, analysis and

joie

de vive present in every interaction? We can dismiss it by saying, " He was

exceptionally well-educated or rich or blessed. " But I would raise the

possibility that he had good mental hygiene habits. What does that mean? He was

who he

was (including qualities and warts). He felt what he felt (reverence,

irreverence, anger, appreciation). He identified his needs (discussing

philosophy or

have his anatomic orifice wiped). He valued other people's gifts and time and

he " opened his cage. " What the heck does that mean to " opened his cage? "

As this disease steals from us or our loved one his/her ability to locomote,

communicate, use familiar skills, there are initial reactions, just as in

other fearful situations. We freeze, flee or fight.

When we freeze, our world becomes narrow and we stop reaching out, involving

other people in our life. Each loss of skill or ability becomes the focus of

our thoughts, rather than discovering how to compensate for that loss with

technology, alternate ways of moving, communicating, or relating to people in a

more personal way.

When we flee, it is usually inward with depression and isolation. We lose

patience with people who don't quite understand our new way of talking and then

we stop talking. We become TV- focused and passive. That leads to

intellectual, emotional and physical stagnation because we don't use resources

that the

physical or respiratory therapist or neurologist suggests. It is easier to

isolate in the short term but it costs big time in the long run.

When we fight, we usually pick the wrong fight. We fight with our caregiver,

maybe because they are so willing to understand. We fight with our doctor,

maybe because she can get up and walk away and will never fully know all of the

pain and sadness. We fight with our formerly athletic body because it has

betrayed us.

When we " open the cage " ; we connect with who we are, where we are as far as

freezing, fleeing or fighting. Then we open up to the world, move out of the

unproductive behaviors and interactions. We challenge ourselves to breakthrough

isolation and passivity. (This is where a good mental health counselor or

prudent medication can help.) We begin to choose new adventures (going to the

movie, setting up a date with our spouse or sibling) and to invite the right

people into our world (enthusiastic, joyful, honest, challenging people, good

storytellers).

You as an individual and family are involved in the biggest fight of your

life. But now is a wonderful time to wage that fight. When Lou Gehrig's fight

was going on, there were no handicapped accessible buildings, accessible vans,

Internet, and websites. Biotechnology and metallurgy has made a difference in

utility of support resources. The " can do mentality " of the 60's and 70's has

made support groups a necessary and productive part of dealing with any

adversity. Fight the good fight and use the full resources.